When Ben was transferred to DHMC shortly after birth, I remember meetings. Meetings with lots of doctors. They told us that Ben would most likely never come off the ventilator. We were shocked. We had to decide whether or not to take him off of life support. HARD! Thankfully Ben made that decision for us. Then there were his feedings. He did not have a great suck/swallow/breathe reflex. It was more like suck/choke/gag/sort-a-swallow/stop breathing/turn blue reflex. I was determined to feed him by mouth...not knowing at the time that it was detrimental to him. It took about a month and a good surgeon to knock some sense into this determined mother. We had to decide whether or not to put in a g-tube. HARD! A year later he had a swallow test. It showed aspiration. We had to decide whether or not to do a "nissan fundoplication". (it's a stomach wrap) Major surgery. HARD! As a result of that surgery, he wasn't able to manage his secretions anymore. He needed a trach. We had to decide. HARD! Ben's muscles have severe contractures. There was a surgery available to help ease some of those contractures. We had to decide whether or not to go for it. HARD! Then there were the multiple PICU stays due to bacterial/viral pneumonias and RSV. The DNR subject came up often. We had to decide. HARD! This just scratches the surface. Here we are...7 years later. It hasn't gotten any easier. Today's subject? Bringing Ben home on a vent. UGH! I've been avoiding this his whole life. "Ben's lungs are tired, he isn't weaning from the vent" they tell me. If I want to take him home, this is my only option. HARD!
It's life altering. It's overwhelming. It's doable.